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rdeb175

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Reply with quote  #1 
I thought we'd seen the back of this illness but here we are again, sigh.

My d had 6 month inpatient care back in 2013 and since then, with some ups and downs, made slow but steady progress and last year was finally eating freely and decided to gain weight herself and I thought all was well with the eating.

Alongside this though she started to experience really bad anxiety (wouldn't go out of the house, wouldn't talk to anyone apart from close family).  THere's a possibility of ASD (currently waitiing for an assessment) and one psych diagnosed BPD.  Various psychiatrists prescribed a whole range of different meds and then one withdrew everything, including a med that she'd taken since inpatient care.  All meds went within 6 weeks, and then all of a sudden the ED came back.  That was back in the summer and I saw straightaway that something was up.  I kept flagging it up with the Adult Mental Health Team but they told me I was being alarmist, and guess what, too controlling.

Her eating declined.  I rang, made appointments, waved red flags but since August has only had two hours of ED therapy.  Now, they've finally got worried, but her relapse is so entrenched I can't reach her and fear the only option now is hospital. I've asked our GP if she can expedite the admission as why is ED the only illness where they wait until you're really on death's door before treating you??  However, it looks like we will have to see this play out with all the anxiety and worry that brings.

My d lives at home, has no work, hasn't been able to continue further education and all she has to think about is her ED. She has no friends, and her family are her only point of contact.  

As she's an adult, I can't do anything and have no leverage.  My d sought treatment herself, wanted an admission to hospital so that she can have control taken away from her and gain some support and therapy.  However, the illness has now got such a hold that that willingness is starting to disappear. 

I don't know now how to help my d - most conversations with her are becoming confrontational, she is hiding her food away and won't eat with us.  I have no idea what she is eating.  My previous tactics (before she reached 18) which were to take control of her eating is no longer viable and not backed up by the treatment team.  Instead I have to step back and watch, and encourage where I can.  Anyone any ideas?


Kali

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Reply with quote  #2 
Dear rdeb175,

Sorry that you have had to join us back here but hoping you can get some good advice from some of us with adult children.
I have a daughter the same age as your daughter.

When she turned 18 nothing changed in the way we handled mealtimes when she was still living at home and now when we are together. I think that sometimes as parents we think that our kids become adults when they cross that magic line to 18, but really, nothing is different from that one day to the next. And especially with an adult child who has a mental health challenge.

How did you handle mealtimes at home when she came back from the hospital for example, and can you resume a similar routine as far as mealtimes go? If she was doing well with her eating, she can get to that place again but will need some help in order to do that.

I really believe that we have a tremendous amount of leverage even when our kids are grown, and in your case, especially if she is living at home. And that we can always become more empowered to take things into our own hands when we don't feel that the professionals are on the same page as we are, because no one loves our children like we do.

Quote:
My d lives at home, has no work, hasn't been able to continue further education and all she has to think about is her ED. She has no friends, and her family are her only point of contact.  


I'm also wondering if, after this relapse is under control, if there are any activities or interests or volunteer activities or creative outlets (crafts, painting, etc) that you and your family can encourage your daughter to take part in. 

Let us know how it goes. Hoping for the best for your daughter,

Kali





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Reply with quote  #3 
rdeb175,

Sorry to say, welcome back. This sucks for you, and I first want to say that I'm sorry for the sadness and stress and pain you must be feeling. I'm in the same boat - and I'm so grateful for moms/dads like Kali, mjkz, Torie, hopeful, etc. who are encouraging on this journey with young adult children.

I wonder - since she wants control taken away and you are simply waiting for doctors to act, would she respond to the following:  "While we wait for the doctors to get you admitted, we are going to run our house like the hospital. We'll start with your admission early, while at home. I'll make the meals, you sit and eat them and we'll do that until an opening comes up."

Maybe we can help you craft different approaches to saying  - you need help and structure to get going eating again, and we are going to start today.

Is there anything she loves - her phone, music, movies, books? I've tried bribery with my YA. It worked minimally, but every kid is different. I told her for every day she ate her meal plan, I would give her $5. In hindsight, I should have said for every meal, so if she had a blip at breakfast, she would still want to get right back on the next meal to earn. 

Hang in there - I'm in the same boat so you are not alone. 



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17 yo D. Diagnosed in July 2013. W/R in Sept. 2013 and has remained so. Roller coaster on and off since, mainly with ED under control but co-morbid depression and other negative coping mechanisms making our life hell. Trusting in God for daily strength and wisdom.
rdeb175

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Reply with quote  #4 
Thanks both for your helpful and kind words.

Yes, I would like to take back control but I fear it would be impossible.  Firstly, the approach to adult ED here in UK is that my d is told repeatedly that I as parent have no control any more and that it is up to her to take ownership of the illness.  Well, to be fair, that sort of worked when she first transferred to Adult services and she did take much more control of her illness and acknowledged that she had one and it was up to her to do something about it.  Now, however, we're in a different place with the illness with it coming back so strongly.  I know it will bring nothing but conflict and probably an element of violence (based on past history) if I were to try and insist. 

I liked the idea of taking control in the lead up to hospital - I might try that.  Though I suspect she will say"You're not a specialist you don't know, you'll try and make me fat".  To be honest I've found leverage over her as a YA as very difficult.  A few months ago, she did want to try a distance learning course and I said I would financially support her but she would need to be in control of the eating.  She then paid for it herself through her dad's money rather than do a bargain with me.  She would probably not do the course at all if it meant giving any ground.  Short of throwing her out or threatening to, I don't know what else to do and at the moment that of course if not a very good idea.  We do have nice times doing craft things together and we like shopping together - those times we are close.


Kali

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Reply with quote  #5 
Hi rdeb175,

Quote:
Firstly, the approach to adult ED here in UK is that my d is told repeatedly that I as parent have no control any more and that it is up to her to take ownership of the illness. 


I'm sorry that is the approach. It is very disempowering for families. Now I'm not saying that the young adult with an eating disorder should be discouraged from "taking ownership" of the illness. But I might think of it as learning good self-care—feeding yourself, keeping appointments, etc. With a safety net underneath (her family and her team) in case she stumbles. And there can be times when it seems to be one step forward and two steps backward. 

This is a very difficult part of the illness. I think many here have experienced a period where we let our YA kids try more on their own but keep a watchful eye and step in if there is a problem.

Depending on your relationship with your daughter, (you know what will work for her), you could also not announce that now you are taking control if that might create a conflict, but maybe try some more subtle methods. You could try planning a shopping trip together. Maybe for some new craft materials? During the middle of the day, lunchtime. While you are out you say, time for lunch and you go in and eat somewhere together (if she is able to eat in restaurants without an unreasonable amount of stress) If not, pack some sandwiches and drinks and go sit somewhere quiet and eat them. Is there a movie or tv show you and she like to watch? Maybe plan a tv night that evening and then serve up food in front of the tv. The next morning, there can be breakfast on the table for you and her when she wakes up. Etc. Try to get into a new rhythm of family meals.

We didn't have much luck with bribery but I do have leverage by helping to motivate her about things she wants to do in her future and then helping her to be well enough to be able to do those things.

At the same time, do continue to strongly advocate for your daughter with her team and try to make sure she gets the care she needs, if a hospitalization seems like the best option for her. Why do you think they discontinued the medication? 

Kali



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rdeb175

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Reply with quote  #6 

Hello again and thank you for really helpful comments. 

Kali - the team discontinued her medication because after just one appointment, the psych diagnosed her with BPD for which there is not official medication and so withdrew everything that she was on.  Our new psych is taking a while to make up her mind.

I don't have leverage but I sometimes have influence.  My d will sometimes ask me - "if I eat this bar of chocolate or piece of fruit, do you think it's enough to be able to go for a walk".  

I have found it very confusing that after 3-4 years of being the person in complete control I now have to back off and my carer techniques are quite often wildly inconsistent - veering from offering advice, to stating what I think is the blinding obvious (but which my d resents) , to saying I won't let her do x or y unless she eats, to trying to be the elusive 'dolphin' - encouraging and nudging her towards a more healthy approach to eating.  My inconsistency is not very helpful but now I've been asked to change my complete approach and I just don't know what to do.

melstevUK

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Reply with quote  #7 
rdeb175,

I am really sorry you are in this position again and I am really sorry that you are being let down by clinicians.  Take the BPD diagnosis with a pinch of salt - clinicians seem to be using it right, left and centre these days when patients are 'difficult to treat'.

I don't think at this stage that it is realistic for you to 'take control' of your d's eating.  But I think, if you explain to her that, as she is no longer in a position to  eat automatically and easily to keep herself well, then she needs to work with you and allow you to be involved in helping her with this process.  I would avoid issues of control, but suggest that you work together to get her back on track.  My d came home three times to work with me to get a meal plan put back in place, and she decided on what changes were tolerable.  If you can get a basic meal plan together (3 meals and 3 snacks) and add more calories every couple of days, she will be able to get back to a safe place.

Tell her that you, as her mother, would never do her harm.  You understand the illness, she needs nutrition, her brain needs nutrition, none of this is her fault but is the way the illness presents itself, and that there is no recovery without weight gain.  But that you will stand and work with her to ensure she starts to turn things around again - ultimately she has to learn to eat with you or in hospital.  And surely she would prefer to be at home with your support.

Express confidence that this is a temporary setback - routine in the way the illness progresses, but that it will get easier as she gets older.

Help her find her dreams, add enjoyable tasks each day and if she wants or needs meds, allow her to choose what she might think will work - but ultimately she has to choose wellness over illness, and do what it takes to minimise her suffering.  This is what growing up will be about for her - and tell her that you will not stand by and watch this illness take away her life.  She needs to work with you to get back on track.  

You may find this less adversarial approach works.   I hope so.  Hugs.  

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rdeb175

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Reply with quote  #8 
Thanks Melstev - those are really wise words - I wish I'd heard them a few months ago to be able to build her trust.

But I fear she has toppled over the edge now.  She told me yesterday that she no longer has breakfast, lunch is a bread roll and tea is a few sausages.  That is it.  She is drinking fluids thankfully (unlike first time round when that was cut out too).  Plus she is out walking/exercising every day.   I can't pull her back from this, her brain is now too severely malnourished and her earlier requests  for help with the eating disorder 3 months ago has now turned into, leave me alone I don't need any help, I just want to lose weight.  Any attempts to talk to her about it that I raise -  she leaves the room.

Her next appointment is Tuesday with the ED nurse, the psychiatrist apparently said last week no need to do anything yet.  How can I get ACTION before my d collapses?  Does anybody know how you can trigger alarm bells because the team just aren't listening.  UK people - do you know how to get through this stupid system?

Should I call a mental health crisis team?  
melstevUK

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Reply with quote  #9 
Hi rdeb175,

I think it is worth calling your local mental health crisis team, yes, because they could come out and assess her.  I don't know what her weight is right now, but even if she is up around a bmi of 16, which would be considered relatively safe, she could spiral right down over a few days.  I have never contacted a mental health team myself, but I am sure they will respond if you explain how much exercise she is doing, compared to how little she is eating.  They could at least come and check on her heart rate and blood pressure and ensure she is not in any imminent physical danger.

In terms of her appointment on Tusday, I would phone the team on Monday morning and say that your d is going to need to be hospitalised, and fast.  That way you give them time to find a bed before she attends, and you can let them know just how dire the situation is.  In an ideal world the crisis team would come out and hospitalise straight away, but if your d was resistant to the idea, I don't what they would do.

If you call the crisis team, you will at least have someone to talk to on the ground who can advise you.

I am really sorry for what you are going through.  Watching your child spiral down in this way is truly horrendous.  



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lorpat

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Reply with quote  #10 
I was going to post a new thread on this topic and found this!  I have unfortunately come back after not being on here for a while.  My daughter was WR a while ago and was eating beautifully on her own.  She went to college and was doing well and things were good - but then she started seeing boys.... ugh.  One she can't get rid of and a new one who is into steroids and bodybuilding (of course - how in her circle of 4 people does she find a guy who is obsessed with his appearance????).  So, suddenly (like in two weeks) my daughter went from eating heartily and my almost forgetting about ED altogether to losing (my estimate - 10pounds) weight and saying things at Thanksgiving break (we are in US) like "I already ate" or "I'll grab a bite later" when she would normally join us at mealtimes.  She is eating still but never eats breakfast and she had been done with therapy too about 6 months ago ( her therapist moved and she was doing so well she didn't want to start over with a new person). 

Complicating things for us is that she had a serious case of lyme disease when this all started and it was never clear to any of us what started the ED and so I think in her mind, she didn't have "REAL" Ed, she had lyme and so, it was sort of denial I think on her end.  We didn't pressure her to see a new therapist and in hindsight, I guess I should have.

Anyway, I'm meeting her tomorrow to talk with her about getting help - but she is 18, lives on campus in our town, and is likely to say "I'm fine, leave me alone."  The only leverage I have is pulling college money - but that seems somehow counterproductive.  Up until 2 weeks ago, our relationship has been a really good one and still is superficially now - but veneer wore off a little over Thanksgiving break and I saw her over a period of time to realize she is not well again.  UGH. 

Where do I go after "I'm fine thanks..."???

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daughter diagnosed 8/15 when she was 16,
wr through maudesly method 1/16,
currently in potential first relapse
Kali

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Reply with quote  #11 
Hi Lorpat,

Sorry you are back but hopefully, you can get some support to continue to make sure that your daughter is able to do well. This might be a blip and if you step in perhaps you can help get her back on track. It is great that she lives in the same town as you.

We have also had a little backsliding and then some periods when things seemed to be going very well and my d. is also at college. 

How I have handled it is that first I give her the opportunity to try and improve things on her own. And set a time limit on that. And then if she is not able to do it, I step in and help. She is still in treatment and sees her team every 3 weeks for weigh-ins, and speaks with her therapist once a week on the phone. I am able to speak with her team and she accepts that, so that if something is not well I am in the loop but mostly I communicate with my d. directly about how things are going. Since you are in the same town it should be easy enough to arrange to meet her for some meals on a regular basis, so you can support her. Is she living in a dorm and eating in the dining hall or does she have an apartment and is cooking for herself? I still go and see my daughter very frequently. Because we are now at the end of the semester and it is time for finals and projects and a very very stressful time for the next few weeks, yesterday I went to the supermarket for her and bought food and we did some meal planning over lunch for very easy/quick to prepare meals so that she would not have to take time to do the shopping and use minimal time cooking. We also have a peapod account and when she gets busy we call in a food order and have it delivered. 

So in this situation, I might say to my d. I noticed over Thanksgiving that you seem to be struggling more with eating and I'm concerned. Let's discuss how I best can support you, since you need to be fueled and to be your best self in order to be able to be successful doing  _______ (fill in the blanks here for the things she is interested in which you think will motivate her). That will open the discussion in a nonconfrontational manner.

Will she be home for xmas break? If so, you can plan on helping her then at home to eat well and improve her weight situation.

Kali





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lorpat

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Reply with quote  #12 
Thanks Kali,
I did not sleep even one hour last night.  I'm a mess.  I know I need to stay strong and I'm really not feeling strong today.  I met with my daughter last night and told her my concerns and she flipped out and denied flatly that she has any type of eating problem.  It was not entirely a loss in that she admitted other things were not going well and that she would like to get a counselor - and I offered to help her soon to call for people - but what do you do when she has no professional support, not eating, and going down hill fast.  This was frankly a surprise and I think she will just rapidly lose weight.  Her free time is spent sleeping and she sleeps so much it is hard to contact her.  

She gets herself up to go to classes and to work - but that's it.  I feel my hands are so tied now that she is 18 and I don't know how to cope with the thoughts of her just laying around starving herself. I don't think I know what to do with that.  It's like the second time here is almost too much to cope with. I think I was stronger going into the last round.

I will take your advice in terms of wording, etc. and I was eating with her weekly already just because that was a nice time to get together.  She started mixing it up about a month ago and I didn't realize she was avoiding dinner out with me - she was saying she wanted to come home and see everyone or other rearrangements that would allow her to avoid eating I guess.  I just didn't even see it.  She seemed well just a few weeks ago.

I am not handling this well.... need sleep.  I can't stop thinking about what I need to do and I keep coming up with no real answers.

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daughter diagnosed 8/15 when she was 16,
wr through maudesly method 1/16,
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Kali

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Reply with quote  #13 
Hi Lorpat,

This is a good first step even though it may not seem it right now because you are shocked by the realization that she is struggling. She has agreed to see a counselor! She doesn't need to have insight, she just needs to eat and be in treatment. She can regain her insight later. So you can start calling and asking around and seeing if there is someone who might be a good match for her and knowledgeable about eating disorders. Does she have a fridge and microwave in her dorm room? Since it is finals time you can show up with a "care package"—snacks to tide her over while she is studying: chocolate covered almonds, pirates booty popcorn, chips and salsa, cookies, or whatever she has snacked on in the past. And keep making dates with her to eat together as often as you can.

She is also coming home for break soon, right? At that point you will be able to see very clearly what she is eating and what she is avoiding eating. And hopefully she will have a therapist by that point. If it is clear at home that her eating is going further downhill you can then have a bit of a tougher talk with her as in: we want you to be successful at school and be able to be independent however if you are not eating enough we will need to discuss the steps we can take next to support you. You might want to also get a nutritionist on board at that point. I know that some people have found them less than helpful with younger kids, but with a young adult my theory is that the more voices in the chorus encouraging normal eating the better. And the nutritionist can do weigh-ins.

You could plan on serving all meals at home during break and asking her to eat at home as much as possible, and making them high-calorie meals.

We have a few requirements for our daughter to be able to be at college.
We gave her a "contract" the one with the red light, yellow light, green light, that I think Psychomom had used it but I personalized it for her with her weight requirements and some of her symptoms. 
(I didn't have her sign it I just gave it to her and said those were our conditions for her to stay in school and stressed that it was not a punishment; it was to keep her safe)
She needs to maintain a certain weight. If she is not able to that it outlines the steps we will take to help her.
She needs to stay in treatment as long as it is necessary.
All paperwork, HIPPA forms need to be signed so that we can speak with her providers if necessary. I also framed that as a way to keep her safe and with the promise that I would always speak with her first before contacting one of them. 
Since you live in the same town as her college, you can always require that she stay home until her weight is in a better place, and that if it goes under a certain number she needs to stay at home and eat there while attending her classes.

I was in a similar place a couple of months ago. I thought my daughter's eating was a little off in late August. By mid-October it was clear she had lost weight and was no longer in the range we had specified in the contract. I went up to see her and she met me for dinner looking thin and telling me how great she was doing. (Kind of creepy...to be honest) The next day we went to see her nutritionist and we gave her a goal for how much she needed to try and gain by the next appointment. She wasn't able to do it so I stepped in and said, well I can help you and I just spent Thanksgiving feeding her up. I had let her know that she didn't weigh enough and that I just wasn't comfortable with her being at school at that weight and that there would need to be a change or we could talk about next steps. (we had that discussion with the nutritionist so that there were the two of us saying the same thing to her) Her eating was much better last week and she was more receptive and now is at a slightly better weight. She was able to extend the break so we spent a week together and I STUFFED HER. She has things she is really looking forward to and I am tapping into them as leverage and motivation. So there is improvement but it is slow and since she is 4 hours away that represents a different challenge. But we had to bring her home from college her first semester because she was so ill, and she is very clear that she doesn't want that to happen again and that motivates her.

Hope it will go well for her. Don't think for a minute that you don't have influence and the ability to intervene and change the course of things just because she is 18. And do something nice for yourself to try and stay calm.

Warmly,

Kali


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mjkz

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Reply with quote  #14 
18 is just a number like weight.  Yes, it means you may have to shift how you approach things but don't let the number scare you!!  As Kali pointed out, you still can have a big influence on how your daughter does.  I didn't start FBT until my daughter was 21 and we were still very successful.  We like Kali did a contract that was not given for her to sign but just the way things were for me to continue supporting her.  Honestly I didn't care if she saw it as a punishment-because she did and I knew she just had to work through that.  It was just the way things were.  I never asked her if she was struggling because I knew she would deny it.  ED doesn't let them do anything else.  I would tell her that I could see she was struggling, losing weight and I wanted to help in any way that I could.  I could see she was not doing okay, etc. etc.  It became finding a way to present what I was seeing in a way that ED couldn't jump in and deny.  I think it is great she sees she needs help and is willing to see a counselor.
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